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  • Anonymous
    Post count: 93172

    Dear Denise,
    thank you for your answer.I had to look up the
    word remission in my dictionary. Being from
    Germany there are quite a few words when it
    comes to this disease which I am not familiar
    with. When where you diagnosed with Graves and
    what did you do for it to go away? And any idea
    why it came back ?
    I was diagnosed with Graves for the first
    time in Summer 1993, I had been feeling pretty
    bad by then – eyes hurting badly, double vision –
    alas only in the morning – and feeling very weak,
    alas no big rashes. I had taken medicine for
    1.5 years – a thyroid blocker called Carbimazol.
    I felt better already after a few months, had my
    hormone levels checked regularily. TSH came back
    up to normal levels after 1.5 years and they
    took me of the medicine – and I thought and hoped
    that was it. My eyes where still very sensitive,
    my left one more open than the other, but not
    really bad at all. When sounds great does’t it.
    Febuary this year I started feeling Graves again,
    you know it after you had it once: feeling very
    shaky, very tired, puls up to 130, eating a lot
    and a very itchy skin. I caught it early though,
    took the same medicine, well I am still taking
    these pills, weird enough but my eyes got much
    better after my hormon levels went bunkers for
    the second time – they are almost back to normal,
    only very sensitive to light and smoke.
    Now what was your remission like.
    If anyone else reads this massage, have you had
    any remission or has anyone been “healed” without
    atomic coctails or operation of the gland?
    Love to hear from people.
    And yes Denise, I am very much trying to keep
    faith and I like to thing positivly.
    Take care
    Pamela

    Anonymous
    Post count: 93172

    Dear Pamela,
    I was diagnosed July 25,1995. I took the radioactive iodine in January of this year and that is when my levels started going down. I believe it came back because 1 treatment doesn’t usually do the trick. I hope the one I have this week does otherwise I will need the surgery.
    My remission was a sign of hope. I was able to exercise, decrease my food intake and my eyes went down a little. Then, one day I started to exercise and I couldn’t do it. Then I knew it was back.
    I was on PTU and Inderal the first time. The PTU surpresses the thyroid levels and the Inderal is a betablocker. From everything I have read very few people get well from the medicine alone.
    Honestly, the radioactive iodine wasn’t that bad for me. I was bedridden the day after the treatment and my feet and hands peeled but besides from that it didn’t affect me that bad.
    Take care,
    Denise
    Denise@rapidsys.com
    P.S. Any pointers on how you stay positive would be greatly appreciated, especially for when I look in the mirror and don’t recognize who is looking back.

    Anonymous
    Post count: 93172

    Hi everyone,
    Since there are so few people suffering with Graves this is a great way to discuss the complications. I was diagnosed when I was 12 and I had most of my thyroid removed when I was 16. I also had radio active iodine. My eyes are still very poppy, (i’m almost 40 now.) Sometimes they are poppier than usual;they seem to change. At 21 I had surgury on them. The corners of my eyes werecut then sewen back to make them appear to be less poppy. When I get in my rages my family tells me that my eyes get more poppier. Does anyone else find this? I was told by an opthamologist that my eyes could get so bad that they would be completly out of their sockets. This Ifind very scary. After my thyroid operation I became underactive and now I have to take elthyroxine every day. Although my doctor says I am on the right dose I don’t feel as good as I know I should. Any suggestions anyone?
    Thanks, Kathy

    Anonymous
    Post count: 93172

    Dominic;

    Barbra Bush and I believe George Bush both had Grave’s Disease while living in the white house. If that did not trigger major research dollars nothing will.

    Diane

    Anonymous
    Post count: 93172

    I had my first bout of Graves in 2000, at the age of 55. I was treated with Tapazole and responded very well. I only had to take it for about 4 mos. I was just diagnosed with a recurrence last week, although it doesn’t seem as severe. It was probably caught earlier.I would like to hear those that have had sucess with a second round of meds. RAI seems to drastic at this point. Thanks

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